By David Tuller, DrPH
Heartbreaking. Infuriating. Mind-boggling.
Those three adjectives are as good as any to describe the testimony heard during the first week of the two-week inquest into the death of Maeve Boothby O’Neill, 27, being held in Exeter, a university town in southwest England. Deborah Archer, the no-nonsense assistant coroner who has kept firm control of the proceedings, issued her own succinct summary before the lunch break on Friday. “It has been an emotional and grueling week for everyone,” she said.
Maeve died three years ago after struggling since the age of 13 with what was later diagnosed as myalgic encephalomyelitis, or ME. (Technically, she was diagnosed with chronic fatigue syndrome; I’m not going to get into discussions of the nomenclature here.) She spent years conducting her own research into the illness and trying different treatments, but she experienced a serious decline in early 2021. She passed away that October. (I wrote about Maeve’s life and death in a long piece last year in Codastory.com.)
The inquest being held at the County Hall in Exeter is a fact-finding exercise, not a criminal prosecution. The extensive media reports from The Times, The Telegraph, The Guardian and other news organizations have highlighted many of the most troubling bits of testimony from the health care providers who have been on the stand. Overall, however, the revelations this week point to one irrefutable conclusion: Whatever individual clinicians and consultants and others did or didn’t do, or whatever we wish they had or hadn’t done, this was a massive systemic failure on the part of the country’s National Health Service.
Equal blame goes to the UK’s medical and academic establishments, which have spent decades promoting the discredited view that ME (and CFS, and what is now often referred to as ME/CFS) is a psychiatric or psychological condition that is treatable and even curable with interventions like cognitive behavior therapy or an exercise program. This bogus perspective has been based on the views of a powerful cabal of prominent physicians and investigators who have conducted deeply flawed research; astonishingly, this crap science has been published in the most prestigious journals and accepted as legitimate by every authoritative body and institution in the country. It is a remarkable case of “emperor-has-no-clothes”-ism.
In case anyone is wondering, the five-million-pound PACE trial, whose first results were published in The Lancet in 2011, is at the core of this mess. In conducting and writing this fraudulent piece of crap, the investigators violated core principles of scientific research. In fact, the study has been put to its most effective use by my epidemiology colleagues at the University of California, Berkeley, who have presented it in graduate seminars as a terrific case study of truly awful and anti-scientific research practices. (I wrote a 15,000 expose of the PACE trial in 2015.)
Given the PACE trial’s worldwide impact on the provision of care to patients all over the world, Richard Horton, the physician who remains the Lancet editor, has a lot to answer for. He has steadfastly defended the study, denounced patients who have criticized it, and refuses to clean up his own backyard—even while presenting himself as a champion of good science.
Others who bear enormous responsibility are the lead PACE authors—Peter White and Michael Sharpe, both psychiatrists, and Trudie Chalder, an expert in cognitive behavior therapy. And let’s not forget their longtime colleague and collaborator, psychiatrist Simon Wessely, who pioneered the psychogenic approach to this illness more than three decades ago. These and other medical grandees have rejected legitimate criticisms of their work from leading academics and scientists in many countries, and they have refused to acknowledge any error. If it weren’t for their pernicious and destructive impact on clinical care in this field, we’d likely be in a very different position today. And so might Maeve Boothby O’Neill.
(I spoke with Guardian columnist George Monbiot earlier this year about the history of this research debacle after he published a scathing column about the issue. This historical context is key to understanding what happened in Maeve’s case.)
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Starving to death after three hospitalizations
In essence, Maeve starved to death despite three hospitalizations at the Royal Devon and Exeter Hospital, which is run by the Royal Devon University Healthcare NHS Foundation Trust, the local branch of the NHS. Well-aware of her deteriorating situation, she was begging for nutritional support for months—and no one had any fucking idea what to do about it. How could that have happened?
The inquiry is designed to answer that question. When witnesses testify, the coroner asks the first round of questions. After that, she yields to the other interested parties. These include both parents—Sarah Boothby and Sean O’Neill, who divorced when their daughter was little—and the lawyers representing, respectively, the regional NHS trust, the GP practice where Maeve was a patient, and the local government safeguarding teams in social services.
“She did everything she could to survive,” wrote Boothby, in a statement she prepared for the inquest, adding that the NHS “did not respond to the severity of Maeve’s presentation, and failed in its duty of care.” Her daughter’s death, she wrote, was “premature and wholly preventable.”
Boothby’s ex-husband, Sean O’Neill, a journalist at The Times, revealed what had happened to Maeve in a 2022 article. His “creative, courageous” daughter, he wrote, “struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.”
Under questioning, the consultants have all acknowledged that training in ME was not part of their medical education. Most, in fact, had not seen ME patients at all, or if they had they were treating them for something other than the illness itself. Given that, the witnesses have often come across like deer caught in the headlights—clearly concerned about Maeve but also confused and bewildered about what was happening to her while being utterly clueless about how to stop it.
That this was a case of systemic failure is self-evident from the proceedings. I assume–or at least hope–it is apparent to the coroner as well. Overall, Archer has engaged in relatively gentle, albeit direct and persistent, probing of the witnesses. She seems to have carefully reviewed the thousands of pages of documents and knows exactly which items she wants to be read into the public record—either by her or the witnesses themselves.
(The hardest-working person during the proceedings seems to be the assistant who sits at a desk below the coroner’s dais. The desk is stacked with a dozen or so thick blue, red and black binders stuffed with the evidentiary materials. Whenever the coroner, a witness, or one of the questioners mentions a prepared statement, medical notes, or any other document, the assistant flips through the binders to find the correct page, then scurries over to the person testifying to make sure they have it in front of them.)
Some of the revelations have been dramatic and troubling. We learned on the first day of the inquest, for example, that the experience was so distressing and traumatic for Maeve’s GP, Dr Lucy Shenton, that she left medical practice afterwards and still suffers from PTSD so severe she is unable to testify. Dr Shenton was said to have told Maeve’s mum that “she had never seen anyone treated so badly” by the NHS. (Along with the parties involved, Archer drew up a list of questions to send Dr Shenton, with the hope that she will be able to provide written answers this coming week.)
At a later point I will likely address individual testimony in more detail. Some witnesses seemed eager to reinterpret past remarks and present in a more benign light what in retrospect were problematic decisions. But none of that should distract attention from the central point: The medical-academic-industrial complex failed Maeve, and is currently failing many other patients with ME–some of them in dire straits. And the gaping holes that the inquest has already revealed in the tattered patchwork of care must be fixed if such terrible outcomes are to be prevented in the future.